Swollen stiff and painful Left knee and tight tendons behind both knees.

[Roltuba]

Hello everyone, I hope all is going as well as you can hope for.

I would be grateful if any of you that have experience what I describe here can throw a bit of light on what is going on. Naturally, at this time, it is almost impossible to speak to anyone medical that deals with me. I’m now in my 6th year with PMR and am mostly doing OK on 6 mg Prednisolone, split 3.5 in the evening and 2.5 in the morning. I could go on at length about how I have arrived at this formula but that’s not relevant to my present concern.

Over the last couple of months my left knee has become very swollen and stiff and painful most of the time (except when at rest). I had it drained 3 times last year, and that, plus the steroid injection, pretty well returned it to normal for a few months. The last time was December 20th 2019. My GP (The Rheumatologist told me to see him about this problem) is unable to do this procedure at this time as they are “banned from using needles” and won’t see me anyway. Consequently the swelling is worse than ever and almost any simple task involving moving about is a challenge. It’s painful a lot of the time and the tendons at the back of the knee are very tight and tender all the time. My right knee is pretty well OK but the tendons behind it are also tight and tender when I get up but not as bad as the left one, and with exercise they become pretty well normal fairly quickly in the morning.

I don’t regard these symptoms as “classic” PMR symptoms. I say this because apart from this problem my 6 mg a day is keeping every other issue at bay. Admittedly I did increase the dose to 8 mg a few weeks ago when both legs became very weak and stiff but as the right one responded OK I’m now back on 6. I regarded this as a short lived flare.

I have been told by the Rheumatologist that the swelling is caused by Inflammatory Arthritis but she didn’t offer any insight into how, or if, this is connected to “Classic” PMR or if it is a known side effect of having had the condition for several years. I suppose it may be just another Autoimmune issue.

I’d be grateful if anyone can throw any more light on any of this.

[Hidden]

Hi, I can't understand the throw away comment it's inflammatory arthritis and no further action by rheumy. I hadn't heard no injections allowed but it's the kind of treatment that is limited to 3 across a year I believe (someone might know better).

You need to be proactive here. If it's inflammatory arthritis what kind? What are the tests you need and the treatments. Some IA are treated with pred so it would explain why you got some relief at a higher dose.

All that being said. Rest, ice, compression and elevation with a burst of nsaids might help if you have no stomach issues or can't take them. I follow the 800mg once after trying it with food. I don't often need any more after that. . I have tight tendons all the time at the back of my knee that only improve with rest and gentle, gentle stretches that strengthen my quads. Remember pred can leave your ligaments a little loose. I have had bursitis in my knee and golfers elbow since on pred.

[PMRpro Ambassador]

On what grounds was the "inflammatory arthritis" pronouncement made? Do I understand it is one single joint?

uptodate.com/contents/diagn...

says:

Our diagnostic criteria — The diagnosis of rheumatoid arthritis (RA) can be made when the following clinical features are all present:

●Inflammatory arthritis involving three or more joints. (See "Clinical manifestations of rheumatoid arthritis", section on 'Symptoms and physical findings'.)

●Positive rheumatoid factor (RF) and/or anti-citrullinated peptide/protein antibody (such as anti-cyclic citrullinated peptide [CCP])) testing. (See "Biologic markers in the diagnosis and assessment of rheumatoid arthritis", section on 'Anti-citrullinated peptide antibodies'.)

●Elevated levels of C-reactive protein (CRP) or the erythrocyte sedimentation rate (ESR). (See "Biologic markers in the diagnosis and assessment of rheumatoid arthritis", section on 'Erythrocyte sedimentation rate'.)

●Diseases with similar clinical features have been excluded, particularly psoriatic arthritis, acute viral polyarthritis, polyarticular gout or calcium pyrophosphate deposition disease, and systemic lupus erythematosus (SLE). (See 'Differential diagnosis' below.)

●The duration of symptoms is more than six weeks.

These criteria are consistent with the 2010 American College of Rheumatology (ACR)/European League Against Rheumatism (EULAR) classification criteria for RA. (See '2010 ACR/EULAR criteria' below.)

The diagnosis of RA may also be made in some patients who do not meet all of our criteria. (See 'Patients not meeting above criteria' below.)

But that doesn't include a patient with one sore knee.

[Roltuba in reply to PMRpro]

Thanks for this. I think what happened was that we (me and my wife) were getting up to leave just after she had recommended i see my gp about getting the knee joint drained. My wife asked her if she could provide an explanation for the swollen knee and the doctor said, with a sort of questioning tone, "inflammatory arthritus". That's all. Since this the gp has drained it 3 times in the course of last year - last time late December. He didn't tell me what the straw coloured fluid was. Hope this answers one or two other queries too. Getting information out of these medics is akin to drawing teeth.

[PMRpro Ambassador in reply to Roltuba]

The liquid will probably have been synovial fluid - made by the lining of the joint in response to inflammation/infection. They should have done various tests on it at the time to rule out some things

This is a good summary of "water on the knee"

medicalnewstoday.com/articl...

[Megams]

~Hi Roltuba - I would be interested to know what was drained from the knee. Was it fluid or do you have a Baker's cyst?

I ask in light of when I tried to reduce from 20mg to 19.5 (hydrocortisone equivalent to 5mg down to 4.5mg Pred) - my R osteo arthritic knee blew up like a balloon within 4 days or so making walking extremely painful.

Whilst I have a Baker's cyst, torn meniscus, cyst growing in the bone + moderate to high grade chondral damage, I still do not know to this day if it was manifestation of PMR still active or noticing the arthritis more with less steroid.

Orthopedic surgeon tells me a knee replacement is needed - I went back to 20mg hydrocort & it resolved - I need to face surgery & still want to reduce steroid but have other issues presently & awaiting further appointments so letting sleeping dogs lay right now - the L knee is on the way out too ~

[Louisa1840]

HI Roltuba,

Sorry to hear about your pain. I was told I had inflammatory arthritis underneath the PMR which was why, after around 18 months of PMR, I thought the pred was no longer working. The Rheumy put me onto a slow release anti-inflmmatory (it seems to have many names but "meloxicam" seems to be the generic name sometimes known as "mobic" here in Oz). I have been so much better!!

However, I would add a rider, beware of doing what I did and feeling so much better that you decide to climb a mountain (or in my case paint the house). My bursitis in my hip is now back and I am stiff all over again. My own fault........

[PMRpro Ambassador in reply to Louisa1840]

Are you on meloxicam and pred?

[Louisa1840 in reply to PMRpro]

Yes. PmR Pro I am on both.

[PMRpro Ambassador in reply to Louisa1840]

Watch out for stomach problems! It is an NSAID and there are problems mixing them with pred. It is also not intended for long term use...

But then, where have I heard that before? Neither are PPIs which is what they will offer you for stomach protection!

[Louisa1840 in reply to PMRpro]

Thank you for the warning. I try to take a few spoonfuls of natural yoghurt with either drug. No problems so far and the relief in symptoms is remarkable. I'll book an appt with my pharmacist and discuss it with him.

[PMRpro Ambassador in reply to Louisa1840]

Out of interest, have you been invvestigated for ankylosing spondylitis?

[Louisa1840 in reply to PMRpro]

Hi PMRPro,

No, I haven't. What makes you ask that question?

[PMRpro Ambassador in reply to Louisa1840]

It can present looking just like PMR - can even cause similar symptoms to GCA - and it often responds to higher doses of pred but the patient may later have difficulty reducing to lower doses. But it DOES respond well to NSAIDs unlike PMR. In fact, I wonder if that may be something that contributed to doctors thinking NSAIDs work in PMR. Now they don't use NSAIDs except at the start while they decide which anti-TNF biologic drug to use.

[Louisa1840 in reply to PMRpro]

Thanks so much for your reply. I will discuss this possibility with my rheumy. He has mentioned biologics but I am unsure what they are? Given that my brother also has PMR & that the PMR initially responded to pred miraculously I felt secure in the diagnosis. Could the ankylosing spondylitis be presenting alongside the PMR? He has called it inflammatory arthritis?

[PMRpro Ambassador in reply to Louisa1840]

medicinenet.com/biologics_b...

Many used in rheuamtology have names ending in -mab, monoclonal antibodies. They are very specific in action so it has to be the right one for the purpose. In the last couple of years there has been great interest in our community in tocilizumab/Actemra which induces speedy remission of GCA in many patients, resulting in a much lower dose of pred for almost all and allows about half of patients to get off pred altogether. It has been in use in some RA patients for several years as have the anti-TNF drugs - but anti-TNF drugs are not advised for use in PMR as they target something that is rarely involved.

Ankylosing spondylitis IS an inflammatory arthritis, predominantly affecting the spine but it can cause other symptoms and the presentation in women is often missed because it may be very atypical (a favourite word with doctors!). Sometimes it is so atypical that it doesn't appear to affect joints specifically but creates a much more generalised stiffness:

spondylitis.org/about-spond...

[Louisa1840 in reply to PMRpro]

Thank you PMRPro

I have had general stiffness for many, many years - long before PMR was diagnosed. Also strange, tingling aches shooting through my wrists.

If ankylosing spondylitis is inflammatory arthritis (which is what the rheumy says I have underneath PMR) and the fact that Meloxicam, in conjunction with a tapering dose of Pred (currently down to 7mg after 3 years) seems to be working (so long as I stay within the sensible parameters of managing PMR) does the successful treatment not prove the diagnosis?

I note that you say a continuing dose of Meloxicam could harm my stomach and I will discuss this with the rheumy when I see him in September. In your opinion would a bilogic be a more sensible approach as I can suggest that to him?

[PMRpro Ambassador in reply to Louisa1840]

No - because inflammatory arthritis is a catch-all term - like "dog". Ankylosing spondylitis is a specific diagnosis, like "King Charles spaniel".

Both pred and meloxicam will relieve symptoms in various illnesses, it doesn't mean it is specifically PMR or a particular inflammatory arthritis. But there ARE drugs that are much more specific for various arthritides than others. No, I can't say a biologic would be better - not without a more specific diagnosis so you know whether there is a biologic that is better than meloxicam. They have very specific mechanisms of action so are used in a very targetted way.

[Louisa1840 in reply to PMRpro]

Thank you so much for your reply. You have an excellent way of explaining things! I'll see how I go over our Aussie winter and visit rheumy with a list of questions in Spring. At least my swimming pool is operative again after Covid shut down which really helps.

Thank you again.

[Roltuba in reply to Louisa1840]

Thanks very much for your helpful comments.Your Rheumatologist seems to have a treatment plan for you. I'm currently engaged in a minor pantomime here due to aspects of primary health care being inoperative (!). My gp won't do drainage at the moment so I'm attempting to get the rheumatologist suggest a way of getting this done -so far no response. If, and when, I ever get to see her again I shall tell her about your treatment.

[Jan_Noack]

I may have had similar reducing around that 7.5mg mark..worse if I went to 7mg ..started just under 8mg . My left knee only had swelling at the front and towards the outside, and some pain and gave away. . I saw my physiotherapist who instantly said it was due to inflammation only and not a joint or bone problem. I thought ..back in 2006 of having a knee replacement on this knee, (I couldn't get up my steps for years unless i lulled myself up with my arms)but it all went away completely when I started on prednisone...like I had new knees that worked! no aind at all! (and after more than ten years this was a plus!) My physio told me to take Nurofen (I objected but he said in this case only to take it for 3 days?) I think..sorry my memory is poor here and to up my prednisone to 10 mg for a couple of days and then to 8 mg..and see what happens. He as right, the swelling and all the pain totally went away..and stayed away. I took about 6 months to get thru that 7.5mg to 7mg level..and then reduced to 3mg without any swelling g or pain. I havetinges back, as well as raised CRP and ESR level at 25mg, and my knees swells and gives away and soot pain at 2 mg pred after a while. It gradually worsens. I just look at it as inflammatory and it means I'm not ready to reduce just yet. He also said it was lucky I didn't get a knee replacement as its ould not have solved the problem. Got twinges now on 2.5mg pred. It's always my left knee, though it was just twinges on my right knee before pred. Both knees, bu again mostly my left would play up going downhill, especially if my dogs pulled me while I was walking them on a lead. Maybe if you are lucky enough to have a good physiotherapist for an opinion. I am lucky in a way as my physio also had Lupus (I think) and inflammation ..so understands. I hope this helps , but I have no idea if it is like you have.

[Roltuba in reply to Jan_Noack]

Thanks for this, it looks very relevant to my problem. I have gone up to 10 temporarily to stop a flare in its tracks but not just for the knee problem. Very reluctant to do this or take Ibuprofen without consulting Rheumy, and going to wait and see if I get "called" as apparently I am on a hospital list for draining, though I haven't heard that directly. What a mess we are in!